Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Monday, October 15, 2012

Life. Is. Beautiful. Period.

Life. Is. Beautiful. Period.

I met a handsome little boy the other day. Like Case, his pre-birth diagnosis was grim. Let me just tell you, when I walked into his NICU room my heart melted. He is so beautiful! Like Case, he also would have been a "candidate for medical abortion". I don't want to get political. I don't care if you're pro life or pro choice. I'm not trying to change your mind but my heart aches at the thought of babies like Case and my tiny, new friend not having a chance at life. I felt his strength (he gets it from his mom.;) and his purpose. He was knit together in his mother's womb. Yeah, his pattern was a little different (like Case's:) but different isn't defective. Different is beautiful. Different deserves a chance at life just like the rest of us. This boy is going to grow up to do great things. I can feel it! He will change minds, touch hearts and bless lives. I know because I have one. A special little mister and I wouldn't change him for the world. And to his momma ('cause I know you'll read this:). Keep it up! You're doing great! You're strong (you get it from your momma;)
Flash back! Here is Case when he was a tiny NICU patient.:)

3 comments:

  1. Oh my, he is just beautiful. Look at that little face. I sure hope he gets to go home soon! Thank you for sharing, I am not sure how I found you (I was Googling something and ended up here) but I'm glad I did. I'll share the post.

    Sending good thoughts your way and to the baby and his family too.

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  2. That is a picture of Case from almost 2 years ago when he was a tiny NICU baby.:) He is home just goes to Children's Hospital every month for appointment's, surgeries and procedures. Sometimes he is an impatient but not usually. I'm so glad you found his blog and share away!!

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  3. ur sons precious!! i work as a hospice nurse and its amazing how ur handling this...what exactly happened and is going on with him

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